Other patient associations ; discussion forums

FMD-Be is working in close contact with other FMD patient associations, as well as other National and European umbrella associations that represent patient groups. Don’t hesitate to consult their websites!

Some of these associations have created discussion forums for patients: you can find the contact details below.

Other FMD patient associations : 

  • FMD Groep Nederland : www.fmdgroep.nl
    • Discussion forum : on Facebook: FMDgroep ( closed group-access after requesting membership)
  • Fibromuscular Dysplasia Society of America : www.fmdsa.org
    • Discussionforum: sur INSPIRE/Fibromuscular Dysplasia/FMDSA

SCAD – Discussion forums :


in het Nederlands :

SCAD Health Club – Thriving after Spontaneous Coronary Artery Dissection: https://www.facebook.com/groups/985722168211829/

Beat scad uk on LinkedIn :   https://www.linkedin.com/company-beta/11110334

 Umbrella organisations that represent patient associations

La LUSS . LUSS is the French speaking umbrella organisation representing  patient associations and patient’s relatives and carers, as well as acting as a voice for health service users in Belgium

Rare Disorders Belgium .   RDB groups together rare disease patient associations in Belgium.

EURORDIS.  EURODIS is a non-governmental patient-driven alliance of rare disease patient organisations. Discussion forum on : “Rare connect.org